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Horrible time on long term epilepsy meds

2 replies

PinkMendinilla · 29/07/2023 17:01

Hi all,

Not sure what I'm asking, reassurance maybe or advice, just feel quite alone.

I have been taking carbamazepine and brivaracetam long term for epilepsy. Recently my prescription included the wrong strengths of both and brand of carbamazepine. I've moved to a new area and had nothing but trouble accessing meds.

Both were supplied as half the usual strength with the instruction to take 2 instead of 1 which I did but almost immediately felt awful. It makes sense that both are slow release so the increased surface area means I am getting a big peak. Cue increased focal seizures, panic attacks, dizziness, imbalance, vertigo, anxiety, mood swings.

One GP would not reissue the prescription, but a locum did and I expected to feel better on my normal meds but after 2 weeks of this still feel awful.

It's really scary and seizures, anxiety and absences are being triggered by stupid visual things like reflections, glass window frames and low clouds and car lights reflected in the rain.

I'm really scared it won't go back to normal and I am on a really demanding course that to be honest, won't wait for me. I have a bit of time off but not much. I am scared going into supermarkets and other places and haven't left the house today as it is windy and cloudy. What if this is me forever now?

OP posts:
EssexMumOfOne · 29/07/2023 17:11

Hi, sorry to read this. It sounds really scary for you. I’ve also got epilepsy and take carbamazepine slow release tablets. Are you still under a consultant or epilepsy nurse at your local hospital? It might be worth you contacting them to get them to see what they advise? I hope you feel more normal soon xx

PinkMendinilla · 29/07/2023 17:32

Thanks for your kind reply. Tbh the earliest appointment I can get with the nurse is start of sept and it doesn't seem possible to speak to a consultant. I've tried ringing the nurses but they're not very sympathetic and just advise me to wait for an appointment. Anywhere I've previously lived has been completely different in terms of care.

I was prescribed propanalol by a GP but am a bit concerned about adding another medication into the mix, not sure if anyone has tried this with epilepsy?

OP posts:
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